You are currently viewing our boards as a guest which gives you limited access to view most discussions and access our other features. By joining our free community you will have access to post topics, communicate privately with other members (PM), respond to polls, upload content and access many other special features. Registration is fast, simple and absolutely free so please, join our community today!

If you have any problems with the registration process or your account login, please contact contact us.

If this is your first visit, be sure to
check out the FAQ by clicking the
link above. You may have to register
before you can post: click the register link above to proceed. To start viewing messages,
select the forum that you want to visit from the selection below.

Questions

Hello I am an optometry student doing a research project on SLE for my anatomy class. We are required to conduct an interview with a patient who has SLE, since I do not know anyone with the disease would someone here be willing to answer some questions for me?

1. How long have you been diagnosed with SLE?

2. How did you know you were ill/how long did it take to diagnose the disease?

3. How has the disease affected your life? Are there anythings that you cannot do anymore?

4. What type of treatment are you currently on?

5. What symptoms do you have?

6. How often do the symptoms last?

7. Is there any information that you think the public should know to make them better aware of the disease?

Questions

Futureeyedoc:
I will gladly answer your questions if no one else responds. However, I am currently in remission and it sounds as if you'd like to speak to someone who is currently dealing with the disease. So, I will wait to see if you get a response from them first.
Saysusie

Questions

Hey futureeyedoc...I'll be glad to help you out....

1.......4 years
2......Due to the fact that I have many other auto immune diseases it took a good 6 months for us to be sure. I have BOTH SLE and DISCOID Lupus.
3.....The disease has affected every facet of my life....due to the constant fatigue,inability to deal with extreme HOT or COLD and any fun in the sun due to the DISCOID lupus the sun causes severe leasions to breakout. There are alot of things I cant do anymore but it would be hard to put them all on the LUPUS as I am also DISABLED due to some unknown rapid deterioration of my spine I have broken several vertabrae and have 8 herniated discs and ARACHNOIDITIS.
4......Once again due to the fact that I am also in remission for liver disease and have other problems the ususla meds cause adverse reactions to me....though I am treated every now and then during a severe breakout with PREDNISONE and Plaquenill.
5.....Constant fatigue,joint problems,loss of weight and all desire to eat,my eyes have problems with dealing with light and my prescription is constantly being upgraded to now I am wearing bi focals when only 5 years ago I did not wear glasses at all,night sweats yet I am cold,severe leasions on my hands making even holding a fork impossible at times...loss of sexual desires and NO tolerance for stress.
6......The symptoms are always there the only thing that changes is the severity of the particular problem/symptom
7......The public is so unaware of this incideous disease due to the fact that it is an Un popular disease. By saying that I mean NO ONE with any clout has yet to be diagnosed so the disease goes on with less attention given to the cause or treatment. The problem is most doctors are not well versed in LUPUS and the testing for it has yet to be considered a guarantee for diagnosis. The fact that there is NOTHING that one person can take and get the same results as another patient. The treatments vary from one doctor to another....thus leaving the patient to feel even more confused,scared, and feeling in a state of hoplessness. There has been NO attempt to even try to come up with a treatment that more than one doc will agreee with the patient on. The fact that with LUPUS comes a great deal of other auto-immune diseases some of which are potentially fatal themselves.

I hope this helps ya....I wish it would help me!!!lol as I happen to be one of the men with this problem....due to the LUPUS I have had 2 heart attacks as it has made the raynauds disease untreatable on a consistent basis causing my arteries to close up when I get a full blow episode,thus putting extreme pressure on my heart, the steroids used in treatment are like playing russian roulette with my liver and also aids in making my sight worse. For the record I am in my mid 40's

stjames

ps If you have any follow up questions please post tham ASAP and I will answer them promptly so you can have all the info you need for your work....who knows maybe it is YOU who will one day make MY life a whole lot more tollerable.

Questions

It does not matter if you are in remission or if the disease is active. If you could tell me about the symptoms/treatments that you had while the disease was active that would be ok. Also, how long have you been in remission? How was it determined that you were in remission? I would really apprectiate a reply before Wednesday if at all possible. Thanks!

Questions

Thank you SO much for your detailed reply. It helped me tremendously and made my project so much better. Being able to see this disease from the human side and not just the clinical side has really helped me understand it. Thank you again.

Questions

You are more than welcome....now please get out there and find a cure for us!!!!! We are counting on ya DOC!!!!!!
Seriously I'm glad I was able to help you and I'm glad you got the info you needed for your project. Feel free to come back and ask anything you want to know anytime....I'll be happy to help as someday I may be in your office and you can help me!!!!!